Skin Graft

After the stress and pain of Christmas and New Year we returned to AH on 2nd January 2009. He was immediately put on a Morphine IV for the pain. Mr Liew came to see him as he had a dressing change and decided that it had broken down so badly that now was the time to do a skin graft. He would also remove some of the birthmark.

He had this done along with another two blood transfusions later in the week. He went home after the first dressing change and returned the following Tuesday. This time infection had taken hold in the new skin and he actually looked like a shark had attacked him. There was a hollow in his side and the grafted area was very wet. He was admitted again and stayed in for a month having a small amount of laser and several dressing changes under general anesthetic. Eventually quite a lot of the graft did take. Right: Fox after graft and first dressing change.

He returned home in mid February, again to go back every Tuesday after that. Right: Infection attacking new graft.

December

Fox was in AH around two weeks. Once returned home, the community nurses would come to him twice a week to help re-dress it and he would return to AH every Tuesday. He took a months course of Prednisolone (steroid) to try and reduce the birthmark a little.


He had several small bleeds during this period, some resulting in admission to either Grimsby or AH depending on where it happened. When this happened, the blood would literally squirt 6 or 7 inches from his body in a continuous flow. Of course we immediately applied pressure but this didn't stop his HB levels continuously dropping.
He had a laser treatment in early December where we had to get up at 3am to get him to AH on time, probably the most tiring day I have ever encountered!




Over Christmas and New Year Fox was in considerable, obvious pain. He would cry constantly, not eat or sleep. At 2.30am on Boxing Day I got up to feed him. While I was waiting for his bottle to cool he was screaming and squirming with discomfort. Withing seconds blood had come through all the dressings and his clothes, pooling the bed clothes beneath him. I shouted up to Mark (screamed the house down....he still didn't hear me though!) and cut off his clothes (not easy ones to remove in a hurry and there is simply no time to waste as he bleeds so fast) and applied several layers of gauze under pressure. He had again gone very pale and quiet and as he'd lose so much blood we called an ambulance. He spent Boxing Day in hospital and had it re-dressed by myself and a nurse, bloods taken

and with his new gift of a knitted santa, was allowed home.

Alder Hey - First Admission

He was transferred by ambulance on the Saturday and settled in on ward L1 (burns and plastics). All the right people came to see him as soon as they could and he was scheduled for his first laser treatment on the Tuesday. On the Monday night I noticed blood was on his gauzes. As ever, I am always concerned when he bleeds as he can lose a lot of blood without it coming through the bandage and I asked for this to be removed. My suspicions were correct and the gauzes had soaked up lots of blood. This was late on and results of a previous blood test also showed he needed another transfusion. They couldn't get a line in anywhere and had to call a matron to do this. This is the only person who has not let me be with him when something was being done to him, I've seen everything, nothing would make me turn into 'hysterical mum'. Instead I had to go outside when they put a line into his scalp. They kept the few strands of hair they had to shave off for me. He had more fluids and another blood transfusion in theatre when he had his laser treatment.

The pictures here show the birthmark as he arrived at AH and with the cap on his head protecting the line there. From what I understand since, speaking to other nurses etc, putting lines into the scalp is quite controversial these days and not favoured.

First Bleed

During October the wound under his armpit became more and more painful and was not clearing up with the dressing changes and cream. On 2nd November Fox was christened at All Saints Church, Waltham by the very caring Rev. Shelton. Fox was excellent throughout and looked beautiful.

We decided to have a family meal at The Haven restaurant on the other side of Grimsby as the children in our party could use the play area there. I went to change Fox and as I came out of the toilet I looked at my hand and blood was pouring down my arm. I shouted Mark to lay his changing mat on the floor and asked someone to get me some scissors quickly. My cousin is a vet nurse and advised me to not take off the dressing as it may be helping to stop the bleeding. This was probably the biggest mistake I made. I should have gone ahead and removed it to ascertain where the bleed originated from. Despite the dressing still being in place I applied pressure with a nappy, all I had to hand. Mark called an ambulance due to the speed he was losing the blood. Fox stopped crying and went as pale as he could possibly ever go. His body had gone in to shock and he began to shut down. In the ambulance he was just silent and sleepy. Thankfully, when we arrived at the hospital they had an entire team ready to work on him. He was still losing blood and anyone who has seen a haemangioma bleed will know it does not just trickle out. They took a good while trying to get a line in to him due to his veins closing. Eventually they managed to get one in his neck and he was then given fluids manually from several large syringes while they tried to order some blood. My blood was also taken to cross match. We were then told he would be transferred to Sheffield, Leeds or Great Ormond Street. Eventually he was stabilised and then we were told that he didn't need to be transferred as the bleeding had stopped. His arm was then bandaged to his side and he was admitted to a high dependency room for the night. The nurses in Grimsby are always very caring and friendly.

Fox spent a week in Grimsby where it seemed like nobody really wanted to remove the dressing and we were told by one doctor on his rounds that it ''wasn't really life threatening''....ok. His community nurse, Linda, helped us re-do the dressing on the Wednesday. Unfortunately, a non-adherent dressing had not been used so he squirted yet more blood out when this was done. Also, where his arm had been pressed against his side for 4 days, it had opened up another area of the haemangioma.

Several different doctors came to see him and he went down to see the Dermatologist again, this time he said it was really beyond his expertise now. We then saw a visiting Plastic Surgeon from Hull. He knew Mr Liew at Alder Hey and said he would discuss Fox with him. Later that day we were told he would be transferred to Alder Hey on Saturday.

Rapidly Getting Worse

This morning I rang the GP as there was more blood in his clothes from his armpit area. The birthmark had become quite raised and this created a couple of folds under there. This made it very hard to clean and quite painful for him.
The GP advised me to take him straight to A&E as he was now bleeding from it (only a tiny amount). When I arrived I was seen by a doctor who brought in the first set of students (get used to this, they obviously don't see haemangiomas this large very often). He didn't seem bothered about it at all and actually asked me why I had brought him to A&E today. He told me to stop the anti-biotics he had started yesterday and now use Fucidin, an anti-biotic cream and just to 'place' a piece of gauze under his armpit.
By chance, our children's community nurse, Linda, from the hospital called to see how he was after he was seen in the children's ward yesterday. I explained that I'd been back this morning and had been given the cream but how is he supposed to keep a loose piece of gauze in place? She offered to help dress it much to my relief and came out later that day. This was to be the first of many, many more dressings. Fox would be constantly bandaged around his chest and shoulder from neck to hips, including his right arm, due to the awkward location (under the armpit) of his wound.

First Problems

Today we encountered the first real problems with the birthmark. Although it had become raised and very bright pink/red doctors still did not think any intervention was necessary. I took him to the doctors today to say there was just a small amount of fluid/blood in his clothing this morning. We were told, if it bleeds then that's when to worry. Our GP sent him to the hospitals childrens ward to be checked over. We were sent away with Flucloxacillin, an oral anti-biotic.

Dermatology Appointment - Grimsby

On 24th September 2008 Fox saw a Dermatologist at Diana, Princess of Wales Hospital in Grimsby. He didn't seem concerned and just made another appointment for 3 months time.

Birthday

Fox Sebastian Edward Bisset was born on Monday 25th August 2008 at 5.25am by emergency cesarean at Grimsby's Diana, Princess of Wales hospital. Apart from the fact he wanted to stay inside and was over two weeks late, he was a great big 8lb 14oz healthy baby boy. Immediately we could see the nurses looking at one another and biting their lip. At this point nothing was said other than ''Hes just got a little mark on his side'' (assuming they just meant something like a pressure mark from being squashed or delivered). A peadiatrician later came to check him over and told us it was a Capillary Haemangioma and in time, it would disappear. We thought nothing of this mark, which was just like light, see through skin and the word 'birthmark' was never used until later on when I think someone said ''strawberry mark''. Then I knew what would happen to him in the future. I was prepared for the mark to get bumpy and bright red/pink, I'd seen this before and expected it. We never thought he was anything less than perfect and no matter how 'chunky' it got, always thought it would just disappear to nearly normal skin when he was older. The photo above is taken at 4 days old, it had already got much pinker than it was at birth.