Update from Maggies mom

Maggie has remained very steady overnight and into this morning. She is in a place where she can remain like this for several days and we'll all be happy. The concentration of oxygen that Maggie needs to keep her blood levels of oxygen in a good range is down, which means that Maggie's medical staff have plenty of room for adjustment if she has any deterioration, but she is also at low enough levels that she can safely stay at the same levels for several days.

They have been calling this Acute Respiratory Distress Syndrome, caused by pneumonia. She needed 100% pure oxygen in the beginning, just to keep her blood O2 levels at the most minimal levels. Now she is needing only 50% pure oxygen to keep her blood O2 levels at 90%. High concentrations of oxygen are toxic to the body for sustained periods of time. At the same time, high pressure blowing the oxygen into her lungs can cause damage if sustained over time. Maggie has improved and stabilized on both fronts, so she is getting only 50% pure oxygen at lower pressure than before.

The goal over the next several days is to slowly lower the concentration of oxygen being delivered into her lungs, and to keep lowering the amount of pressure delivering that oxygen.

Maggie's lungs sound very "squeaky." They've let us listen through the stethescope and her breathing sounds so laboured. This is actually an improvement because there are large parts of her lungs that were so inflammed that they were hard and inflexible and not expanding or contracting all all with each breath. Now, the sections of her lungs area trying to expand and contract and it sounds worse, but its a sign of improvement.

Thank you so much for all of your prayers!

Maggie is recovering quicker than expected!!! Thank you for all of your prayers! This is the update from Maggies mom: Thank you all so much. I can't count how many people all over the globe have been praying and cheering for Maggie. Maggie is continuing to recover. She has taken over more of the work of breathing and we hope to wean her off the ventilator over the weekend. Her kidney function has really picked up and she's starting to shed some of the tons of extra fluids she's built up, which is a sign that her body knows it is healing. She desperately wants to wake up but she's very confused and disoriented. She knows we are there and she clenches our hands but she has difficulty focusing on us visually. I found a soft doll with many different textures and brought it in for her to touch and I stroke it over the dolls body. When she's more awake, she'll enjoy touching all its buttons and zippers and velcro. She is confused and a bit sad and very, very stoned. She is still enjoying listening to tapes of her sister and to a CD of her nursery school class singing their regular circle time songs. She clearly does not like the breathing tube! But she is a fighter and she's really come back strong over the last two days. Hopefully, by the weekend, we can get the ventilator out and she can come off the sedatives she is on, and then we can hold her in our arms and not just hold her hand. She has been on some powerful medications that will have to be slowly decreased. She was sleeping comfortably when I left her just now.

The whole ICU is cheering for her. One nurse stopped in tonight who has not cared for Maggie, but she'd gone home and googled Angelman after hearing about the little girl in bed 3. She found our website and read all about Angelman. Then she came in and saw the pictures of Maggie that we've had up on the computer screen, and she realized it was the same kid! She thought Maggie must be a celebrity. Indeed, she is.

From Maggie's mom: Maggie had a rough day. It wasn't really a setback, but she had a long, miserable day. We tried to reduce the amount of medications she is on and this didn't go well. At the same time, many of the medications appear to have caused painful abdominal cramps and nothing seemed to soothe them. It was sobering for me to realize how sick she still is. Maggie's lungs have healed enough that she can keep her body pumped full of oxygen as long as she lies still. But the cramps were enough to cause her oxygen levels to drop. Then, her muscles would be exhausted and she would need more oxygen and more assistance from the respirator. The doctors are trying to keep her less sedated so that she will cough and help loosen up all the drainage in her lungs. But coughing is also exhausting for her. On the upside, each coughing spell is getting easier for Maggie to recover from. A week ago, if she coughed, it took several hours to recover and get back to the levels of oxygen and pressure that she'd had before. Now, it takes just minutes, but leaves her exhausted.

So Maggie has no playtime today. But she knew we were there with her and she clenched our fingers hard for comfort and she listened to our voices. She seemed to take some comfort from the tape of Ella and the CD of her friends in nursery school, singing all their familiar circle time songs. It was hard to stand by while she was in pain and miserable. Her eyes are filled with confusion and discomfort (and sedation) and she has no way of making sense of what she is experiencing. But at the same time, she is alive and aware enough to be this miserable, and this in itself is proof that she is recovering. We had our favourite nurse today, too, and that helped.

We are coming up on two weeks in the ICU. The long hospital stay is wearing all of us down. Rob, Ella and I are all fighting colds. The elation over Maggie's recovery is battling with resignation about how much time we still have left in hospital. The emotional ups and downs of the past two weeks have just worn us out. They don't expect Maggie to breathe on her own before early next week, and we're expecting two weeks in hospital once she's off the respirator. Ella is a basket case and is waking constantly in the night, just inconsolable. She must be so confused about Maggie's absence. We all just want Maggie home! The girls haven't seen each other in almost two weeks and they won't be reunited until Maggie is in the step-down unit.

All that said, Maggie didn't really go backwards in her recovery today, she just didn't move forward. We still hope to be out of the ICU by Monday or Tuesday.

Thank you for all of your prayers! Please continue to pray for dear little Maggie.

From Maggies mom: Maggie had a better day. She didn't have any stomach cramps and that made a huge difference. They replaced her catheter and decreased her lactolose, not sure which one was the culprit but she was much more comfortable. She had several periods of being wide awake. This is fun in that she knows we are there and she can explore her books for a minute or two, and listen to her sister on the cassette player, but hard in that she is just plain miserable. She looks at me with those big eyes and such a desperate expression to rescue her and she tries to cry but the breathing tube doesn't let her.

We do have great news, though. She made good progress last night and they even considered extubating her today. They decided she wasn't ready, but tomorrow is a very real possibility. There is sort of a tipping point where the ventilator stops assisting breathing and actually makes it more difficult, and they think Maggie is close to this point. Once the tube is removed, it will be harder to suction her lungs, and she has lots of secretions now as she tries to cough stuff up, so they have to weigh the advantage of suctioning her lungs against her ability to breathe independently. We are crossing our fingers that she comes off the respirator tomorrow. If that happens, she'll be in the step-down unit about 12 hours after extubation. Once she's in the step-down unit, she can be reunited with Ella and we can hold her!

I shouldn't have been so discouraged yesterday. I can see now that each point where it seems Maggie is really struggling is often a turning point for a new phase in her recovery. Hopefully my next update will be from the step-down unit. Thank you all for the continued encouragement and prayers and good wishes. This has been a tough time for all of us. I think Mag will be so happy to get out of the ICU.

From Maggies mom: So the fantastic news is that Maggie has been extubated. No more ventilator! She is holding her own and breathing with just a cannula (sp?), the little prongs that rest in the nose and give extra oxygen.

The hard news is that she is much more frail than we expected. She has had some seizures, likely because one of her sedatives was a benzo and maybe was just decreased too fast. (I probably won't mention that part to my family since they'll freak.) She has been so powerfully sedated that seizures were virtually impossible, but now that she is on less meds, she had a rough afternoon. She is very weak, very confused and very sad. Whenever she tries to cry, she holds her breath and ends up de-satting and needs epinephrine through a mask, the same med you give someone after a bad allergic reaction to dilate blood vessels and improve air flow. We thought she would be more comfortable after the breathing tube was released, and I think she is, but she is very uncomfortable and her throat is badly swollen. She was so sad, and clenching our hands so tight, that I thought it would comfort her to move her into our arms in a rocking chair. I've been dying to hold her for weeks now. That turned out to be a huge mistake. Her breathing passages are just too fragile and it took her about two hours to recover from that one attempt to move her. So for now, she stays in bed, propped with pillows. She is trying to cough, which is great, since she has a lot of fluid that she still needs to move up and out of her lungs.

Its likely that the reason she seems so sad is that she has been very heavily sedated. Now, for her to breathe completely on her own, she has to have much less sedation. So she is more alert, but she is also better able to communicate her anxiety and fear over what she is and has experienced. Its just heart-breaking.

Hopefully, she will stabilize over night and we can all move down to the step-down unit tomorrow. They've given us a room again so that we can stay overnight with her tonight. She was finding comfort in watching Finding Nemo and in her little tactile books when I left Rob and Maggie a few minutes ago. Thank you for all of your prayers. Please continue to pray for little Maggie.

Thank you Lord for healing Maggie!! Thank you all, for all of your prayers!!! Maggie is back home and doing well!! PRAISE GOD!!!