I seem to have missed the last couple of years. McKenna is now in Denver and doing well. We have visited her cardiologist twice since we have been here. As our last visit, McKenna had an EKG and other testing--which all came back great. We are only visiting the cardiologist once a year, so won't have an update until the end of this year.

We saw Dr. Singh again this morning. Her lung continues to look better (in fact, there is not much cloudiness left :-) and they have reduced her Lasix quite a bit and stopped her Potassium.

We asked Dr. Singh today for a diagram/explanation of what they have done (for future reference with our doctors, urgent care, etc) and he was taken back. Not because he has never been asked, but because that means he needs to draw it and explain it in less technical terms. It should be a fun exercise for him.

They took an x-ray of her lung today and it looked much better! I am very relieved. He said that the blood clot that is in there will take a while to break up and be reabsorbed into her body. She is more active and eating better. I know that is due to being home. I really love her doctor. He is on the same page as Rob and I, and he listens to us when we share our concerns.

We finally got her home today! That doesn't mean it won't be slow going getting her better. The doctors are very concerned about her right lung. It didn't show any improvement while we were there, and in fact it looked worse. This troubles them because when they listen to her she doesn't sound as bad as it looks. So they told me that if it doesn't look better in the next three weeks they will have to make an incision in her chest and look around an maybe suction whatever that stuff is. We are gong to give her a blessing tonight to help heal her lung. The doctor said if it doesn't get better it could do permanent damage. I think that just by being home her condtion will improve. She is so happy to be home. Thank you to everyone who has prayed for us. I know they are being answered. : )

I got a call from Kris this morning because the doctor who is standing in for Dr Singh said they wanted to keep McKenna until Monday. Since that is unacceptable, we renegotiated with them and they agreed to let her go tomorrow morning--if she does well tonight.

We were having lunch shortly after and McKenna did not want to eat the rest of her hamburger. We told her that she had to if she wanted to go home. I have never seen her eat so fast in her life. We can tell she is ready to come home.

I neglected putting a status here yesterday. I took some eggs and steak to the hospital yesterday because the nurses wanted her to eat more protein (because her hemoglobin is down) but McKenna won't have it. Kris asked if she wanted some eggs, but McKenna said no because they only offer scrambled and she wants fried! So, now she can have fried eggs.

The culture is still negative (they will continue to watch it for seven days). So, it sounds like they will give us an oral antibiotic to take from now through the 10-day period (much of which we hope will be at home). They also took out her pacemaker wires today.

Her lung is improving slowly, but her patience is wearing thin. When she was first brought back to consciousness, she was very accommodating when they wanted to test her or listen to her heart/breathing. Kris says she no longer is so willing. She just wants to be back to normal. Dr. Overman said that they want to watch her for a couple more days.

I talked to Kris this morning. The culture they took from her peripheral IV is still negative--which means that the staph infection was likely just in the IV line, not her blood. That also means that she may be eligible to come home as early as Wednesday.

Her lung is still cloudy, but getting better slowly. She also continues to have a fever. However, she is becoming more energetic and mobile (she told me this morning that she doesn't walk like a penguin any more).

This morning the results of their culture came back positive. They started an antibiotic drip and are putting in a peripheral IV so they can see if the infection is from her central line or something else.

Her lung has also clouded up and is looking worse. They are still continuing her nebulizer treatments every three hours.

Because of the infection, she cannot leave her room. This limits that amount of time we can have the other kids visit because they are coughing and because it is a small space for so many kids for a long period.

The x-ray they took this morning was better than yesterdays, but worse than the day before. They are running a blood culture to see if she has an infection (because of her constant fever). We should have some idea what is going on by the end of today.

We heard from Dr Singh this morning that McKenna's lung is getting worse and he doesn't want her to leave at least until they have it stabilized.

They are moving to nebulizer treatments every three hours and trying to get McKenna to move/walk more. McKenna was, understandibly, unhappy about that. Kris said she started crying when they told her. But, she also walked with Kris to get some breakfast.

Tonight we visited the hospital and saw that McKenna had a rough day. She was in the process of getting a nebulizer treatment when we got there, and she was developing a fever (despite the mandatory Tylenol every four hours). Kris said that she constantly sweats, but the doctors don't appear to be concerned about that. Dr. Singh said that we may be able to take her home on Friday.

They moved McKenna out of the ICU this morning. She is moving better, but still unable to sit up for long periods or to talk on her own. However, we think that she will progress faster in the more "home-like" environment of the recovery unit.

We went and saw McKenna this afternoon. She is very weak--she won't even lift her head. I think it has a lot to do with the time she was intibated, as well as the fact that she hates being there and has no motivation to move. We tried to explain to her that if she moves, she gets to come home faster--but she is only four and doesn't want to.

She does seem to be more animated when the family visits, so we are making time to go down every day. We hadn't planned on visiting today or tomorrow, but will make the trip if it will help her.

McKenna was extibated this morning. When I visited her after lunch, she was awake and talking. She talks very quietly because it hurts (both her throat from the tube and her lungs from the surgery). They have also let her drink some juice on her way to eating solid food.

She was excited to see and talk to all of the kids. They won't let us hold her yet, but they did let Kris get on the gurney with her.

As I mentioned in the last update, they had to stop the propofol. Because of that, Kris (and Grandpa & Grandma Grout) were able to talk with McKenna yesterday evening. McKenna tried to talk, but was unable because of the breathing tube. However, it is a good sign that they should be able to extibate her this morning.

Apparently, you can only use propofol for 48 hours, then it starts to become toxic (it is a sedative/relaxant). So, they took McKenna off it early this afternoon. She woke up and talked to Kris (as much as she can with the ventilator hooked up) then went back to sleep.

Dr Overman (the surgeon) came by and let us know that she will stay on the ventilator through tomorrow. They did take out her chest tube, which means that the only thing she has left, other than IVs, is the ventilator tube.

I don't imagine that they are going to change anything today. They will keep her sedated and continue their nebulizer treatments and lung suction to clear as much of the mucous from her lungs as possible.

They did another x-ray this morning to look at her lung. The lobe is still not clearing, so they may hold off on extibating her. At least the cardiologist on duty thinks so. They are waiting for the surgeon to make the final call, but it looks like they may wait.

Other than that, she continues to do well. The only thing holding her back, at this point, is the congestion in her lung. They just finished a nebulizer treatment which included pounding (softly :-) her chest to loosen some of the mucous.

The bronchoscopy went very well. They were able to remove a clot that was blocking the upper right lobe and remove a large volume of blood. There is still some oozing, but the airway is clear now and the x-ray should show that the lobe is now usable.

They put in another chest tube around 10:30--It drained about 120 CCs in the first five minutes, but it also looks she has some blood in her right airway.

On the bright side, Dr Overman said that we have a 90% chance that she will not need a permanent pacemaker. Because she had regular rythms for the first several hours, they think swelling might be causing her problems. We will see.

She has started trying to wake up. She opens her eyes with a frightened look, then goes back down. The nurses said that it is somewhat involuntary, and that the Versed will cause her to forget anything she may remember from her moments of lucidity.

They are also talking about extibation for tomorrow morning.

We got up this morning and found out that McKenna's heart had stopped beating last night. They had her attached to a pacemaker (external--apparently they connected pacemaker leads during the surgery and had them hidden just under her skin) and when Dr Singh turned it off, she flat-lined.

So... they think they will need to go in after she has stabilized from this surgery and install a permanent pacemaker. If she stabilizes and keeps her heartbeat regular, they may not...

She also has some blood in her right lung from the surgery, so it sounds like they are going to insert another chest tube.

We got word around 2:30 that the surgery was complete and successful. Dr Singh said they would probably be in recovery for an hour or so while she stabilized.

We didn't hear back from them until 5:30, when she was in the Pediatric ICU (PICU). She looks good--she had multiple tubes, IVs, etc, but her oxygen is in the upper 90s and things appear to be going well.

McKenna entered the OR around 8:30, and the operation started around 10:30. The time in between was to get her ready (insert tubes, IVs, etc.)

The surgeon said that the actual procedures will take about 5 hours. The procedures they are performing include a Rastelli, bi-directional Glenn shunt, and an atrial baffle (all customized for McKenna).

We had our pre-op visit today. McKenna did well, even when they had to draw some blood. They finally listened to us, and called anesthesia before the nurses tried to get a needle in and blew a couple of her veins.

We are going to spend the night at a hotel closer to the hospital, because we have to be there at 7:00. A couple families from the ward are going to watch the rest of the kids tonight and tomorrow.

I seem to have missed an entire year. After my last update, McKenna received her third shunt. They did not replace either of the prior ones, nor does it appear that they will ever remove the shunts. Because of the size of her vessels, they will probably just tie off the existing shunts when a more permanent fix is in place.

McKenna last saw Dr. Singh in January. She appeared to be doing well and we were told to come back in six (6) months.

McKenna eats like a horse. She is constantly hungry, but does not gain any weight. She is the skinniest of any of our kids (but not for lack of trying).

An update so soon? No this is not an April Fool's Joke.

We took McKenna in to see Dr. Singh and had a surgery arranged for the end of April. It is much sooner than we anticipated, but her oxygen is down, her energy is down, her "cranky" is up, and her hemoglobin is up. I think it is the last one that actually spurred the Dr. to go ahead.

She will have the second shunt replaced with a bigger line and the surgery should be relatively simple (as heart surgeries go ;-).

I haven't updated the site very well. McKenna had a heart cath today and was very good for it--although she didn't have much choice. They put her to sleep soon after we arrived at the hospital. Dr. Singh performed the cath and said that she is doing well. However, he again commented on the fact that they put in too small a shunt at the last surgery. In addition, the shunt they did put in was somewhat constricted and, because it is made of Gortex, he could not stretch it any with angioplasty.

So... We are going back to see him in about six weeks. During the interim, he will meet with the cardiologist team at the clinic and determine what will happen next. It sounds like some members of the team want to try the reconstruction now, whereas Dr. Singh wants McKenna to be a couple of years older. However, I do not think they have reached consensus of what to do anyway. Dr. Singh's proposed plan is to remove the shunts, place a tube from her left ventricle to her aorta, place a tube from the right ventricle to the pulmonary arteries, and somehow get the blood to flow from the body and lungs to the correct atria. I am not sure what the others in the group propose, but we should find out at our next appointment.

McKenna is doing very well. She moves around the house (up and down stairs) with ease and speed. She has started talking and says a few words and has associated some interesting sounds with objects. She continues to be tired and occasionally unconsolable. She just started receiving a monthly inoculation for RSV that is given to high-risk children. Because of her weight, one would not really think her susceptible to RSV. However, she has had it twice and does not really need a bad case to drop her already low oxygen to dangerous levels.

On a happier note, I got back from a couple weeks out of town for work, and McKenna is walking. She moves around the house quite well and has a serious attitude.

Our visit to the doctor was good, but not great. Her oxygen is still in the 70s, although she is much more active and happier. Dr. Singh said that they were debating whether to put in a 4mm or 5mm shunt. They decided to put in a 4mm, but a 5mm would have been better for her. (Hindsight is 20/20!)

What this means is that depending on how fast she grows/outgrows the shunts, she may require another shunt (or replacement) before they can perform the reconstruction. They want here to be four or five before they try to fix her heart, and how well she maintains her oxygen levels will determine whether she will require the additional shunt surgery.

This surgery was essentially the same as the first shunt operation. The difference is that the first shunt ran from the Aorta to the right pulmonary artery. This shunt runs from the left subclavian artery (the one to her arm) to the left pulmonary artery.

Instead of entering through McKenna's sternum, they were able to go between the ribs on her left side. The incision ran from under her arm almost to her backbone. It may look nicer to use, but the doctors said that it is actually more painful for McKenna because all of the muscle has to heal from the incision. With entrance through the sternum, only the bone needs to heal and the nerves that carry pain are generally in muscle.

McKenna recovered very well from this. The day after the surgery, we went into the PICU and they had her arms tied to the bed because she was trying to pull her ventilation tube out. The ended up extibating her about 20 hours after the surgery, and she was walking around her crib after about 48 hours. We were out of the hospital in 5 days.

We got McKenna into the doctor's office and it seems that they do not want to accept a low oxygen reading. The first reading they got was under 70, one just above, and one at 75. So, Dr. Singh said that we should bring her back in another two months.

Kris was not willing to accept that. She told Dr. Singh about the problems that McKenna has been having with sleep, eating, and overall cheerfulness. Dr. Singh consented to perform a hemoglobin test to see if McKenna's was high (meaning that her body is producing greater quantities to make up for the overall lack of oxygen). We took her to the lab to get blood drawn and then went home. We had been home about 5 minutes when Dr. Singh called to say that her hemoglobin was too high and that they would be calling to schedule her surgery for the end of the month. They called and her date is set for 28 August.

The operation will be essentially the same as last time, just with a bigger shunt. They said this operation will be less invasive than the last and that she should be out of the hospital in 5-6 days.

McKenna is started what seems to be her downhill crawl. At her appointment, Dr, Singh said that she was starting to look more cianotic around her mouth. Her oxygen was in the low 70s. Kris has been feeling for a little while that McKenna will need her next surgery in August. Dr. Singh said that parents are usually right, so our next appointment is right around the first of August.

McKenna is now able to sit herself up, but we cannot get her to crawl. She can roll around to whatever she wants, so she appears to have little desire to learn another method of transportation. (Not to mention that she knows she can cry and get picked up when dad is home.) We decided to buy a window A/C unit for camp. We want all the kids to be able to enjoy camp, so we figured it would be better all around to get it.

McKenna is still doing great. Her vitals were a little lower this checkup, but she continues to grow like you would expect from a normal baby. Dr. Singh said that she should be fine, and wanted her next checkup in two months instead of the traditional one. However, she will be more affected by heat and humidity than the other kids. This is not a big deal (because of the modern conveniences of AC) until we go to camp in June. We are still not sure what to do about that!

McKenna continues to amaze us. We went in for her checkup this morning and her oxygen was at 92%. Even Dr. Singh was surprized that she was still high. She gained two pounds (just started eating cereal) and is doing great. Her surgery is still pending her condition changing for the worse.

One thing we did find out was that Dr. Singh convinced the Cardiologist group to allow for the possibility of dual ventricles in the final reconstruction. So~, that means her next surgery will be another shunt that should last five (5) years. But, as well as she is doing, it could potentially last longer!

We are convinced that she is doing so well because of the prayers being offered in her behalf--especially from her siblings and cousins. I got a call last night from Mike because Recebba and Sara were bugging him to find out how McKenna is doing.

McKenna's catherization went very well. Dr. Singh told us when he came out of the cath lab that he was sweating throughout the entire procedure. When asked why, he responded that McKenna is a special girl and so he was worried. What a confirmation of her beautiful spirit.

Anyway, the cath confirmed the original diagnosis. Her shunt is doing well and everything else was as expected. Dr. Singh will take the results of the cath and review them with the rest of the team of cardiologists to decide what to do next. One of the surgeons wants to leave McKenna with a single ventricle. Dr. Singh thinks that determination should not be made next. However, the procedures for her next surgery will depend on what is decided (single, double, or wait-and-see).

Based on her current condition, the next surgery will now be in April/May sometime. As I stated before, the timing will depend on how well McKenna does and where she keeps her oxygen stats.

McKenna is doing even better than she was at the last checkup--kind of. We took her into the emergency room on 29 and 31 January because she was having trouble breathing. She was diagnosed with RSV again, but we were told that she could stay at home as long as she was able to eat and did not get very cianotic (blue). She seems to be on the tail end of the virus and now has little trouble.

McKenna is doing very well. Her oxygen saturations are a little lower than the cardiologist wanted, but she continues to put on weight (she is now at 11.25 pounds [5.11 kg]), eat, and sleep well. In fact, she is sleeping through the night now (approximately eight [8] hours). Because of her growth, she will probably receive her next surgery earlier than we originally expected.

Because the Ductus Arteriosus (which is like a natural God-made shunt) normally closes, the Prostaglandin medication given to keep the Ductus open will only work for about 2 weeks (fortunately for McKenna, hers stayed open for about five [5] weeks without Prostaglandin).

Doctors have to construct a similar structure called a Blalock-Taussig Shunt which is made from a synthetic material called Gortex. They shape the Gortex into a tube like a straw. They connect one end of that straw to the artery going to the Right Arm and the other end to the artery going to the Right Lung (Pulmonary artery).

This is very important because it allows some of the already mixed blood going mainly to the body to shift and go to the lungs so it can pick up more oxygen and your baby will become more pink.

A normal heart has four distinct chambers with blood flowing into the right atrium pumping down to the right ventricle and through the pulmonary artery to the lungs. Blood comes back oxygenated to the left atrium pumping down to the left ventricle and out the aorta to the body.

McKenna has several defects in her heart that change the regular flow of blood both from the body, through the heart, to the lungs, and to the body. Below are pictures of the individual defects found in McKenna's heart and the overall picture of her heart provided by Dr. Singh of the Children's Heart Clinic in Minneapolis, MN.

The conditions that McKenna faces include the following: PDA, ASD, VSD, pulmonary atresia, partial situs inversus, and TGA.

Patent Ductus Arteriosus (PDA)

Failure of the ductus (to allow the fetus to bypass the inoperable pre-birth lungs) to close in the early weeks of life, as normally occurs, results in a PDA. This allows blood to flow between the aorta and the pulmonary artery, leading to an increase in flow in the lung circulation. If the PDA is large the pressure in the lungs may also be elevated.

Surgery may be needed when the ductus is large, but in many cases the ductus can be closed using a spring coil introduced with a heart catheter. With some larger PDAs a 'Device' (similar to that used for closure of ASD) may be employed.

This is part of the Christmas letter that we sent out in 2001. It was written by Kris and gives some details about McKenna and how we got where we are.

In January of this year, I was not feeling very well. It had been going on for a while, so I went to the doctor to see what was going on. They just by chance did a pregnancy test to rule everything out even though I told them I did not think I was. It came back positive. I was scared because I had been bleeding. The doctor told me I was probably trying to miscarry. He did an ultrasound to see if it was an ectopic pregnancy because I had been having a lot of pain in my lower back. The ultrasound showed no sign of any baby. The doctor then told me that I had miscarried and he wanted to do a D&C (cleaning of the uterus). I felt that I should not, so I told him I wanted to wait and see what happened even though he told me there were a lot of risks to waiting. We eventually found out that I was pregnant.

All through this pregnancy, I felt like something was not quite right. Because of these feelings, I did not tell most people until I was six months along. She was born three weeks early and weighed almost 8 lbs. She was a perfectly healthy baby girl. Very strong and stubborn like most Tolmans I know. :-) She passed her two-week checkup and was gaining weight.

Just after the birth, the family had colds and McKenna was starting to get a stuffy nose. I felt like something was not right and wanted to take her to the doctor to make sure. I took her into the clinic, but they told me to take her to the ER because she was so young. The ER staff hooked her up to several lines to monitor her vital signs. The alarm kept sounding and they kept playing with it to get it to work. Finally, one of the nurses said it was reading right and that it really was that low. They kept asking me what made me bring her in. I said that I just wanted to make sure she was okay. Things got a little hectic after that and they finally told me that they had to fly me to Children's Hospital in Minneapolis where they have excellent cardiovascular surgeons.

They discovered that her internal organs are not where they are supposed to be which is a sign of heart problems. Her heart did not completely form and she has basically only two chambers. The doctors and nurses were amazed that she was so healthy and strong. They said I was very lucky I took her in to the hospital. I know it was not luck at all. Some said it was mother's intuition, but I know it was the Spirit prompting me.

She had her first surgery the day before Thanksgiving. It did not take as long as they thought because she was so healthy and strong. She is recovering very well and we got her home a week earlier than expected. I know this is due to your prayers and fasting. I had a strong sense that Grandma and Grandpa Tolman and Grandma Reed were with us and giving us strength. Many people have called and offered their support, including our neighbors who have kept our driveway plowed. I think she is our little miracle, as all children are. She must have been very determined to come to earth and be a part of our Family.